I am posting these 2 news stories here because they are not current articles. I was recently made aware of them and found them thought provoking. They were both published in Forbes magazine, one in 1999 and the other in 2000.
The Organ King
Brigid McMenamin, 11.01.99
EVER SINCE FORBES EXPOSED THE federal monopoly that's chilling the supply of transplantable organs and letting Americans who need them die needlessly (FORBES, Mar. 11, 1996), Health & Human Services Secretary Donna Shalala has been trying to challenge the way United Network for Organ Sharing operates.
But the Richmond, Va.-based cartel will have none of it. Using a heavy-handed mix of litigation, lobbying and bullying of its opponents, UNOS has solidified its position as the federal contractor in charge of deciding which people get new kidneys, livers or hearts.
Under the UNOS system, most organs are shared only within 62 regional territories. A potential recipient in, say, New York, where donations are low, can expect to wait months for an organ to show up, even though there may be so many donors across the river in New Jersey that New Jersey patients are getting transplants after short waits or when they are far from desperate.
Though UNOS has begun to relax the locals-first policy, still, last year 4,855 Americans died while waiting for transplants. (This doesn't even count people pulled off the list after they became too sick to handle a transplant.) It is a matter of debate how much lower the number of deaths would be if the system for obtaining and allocating organs were more rational. But Consad, a research outfit in Pittsburgh, estimates that at least 1,000 people die needlessly each year.
When Shalala urged that organs be shared over wider regions, UNOS Executive Director Walter K. Graham refused. He decreed, in a memo to his member hospitals and organ banks, that UNOS doesn't have to take direction from the federal government on this point.
UNOS' main source of funding is the $375 registration fee potential organ recipients must pay to get on the waiting list. That amounts to some $13 million a year, money that is supposed to be spent mostly to match organs with suitable recipients. In reality, at best half of the money goes to that.
What about the rest? Graham and his 40 board members spend some $1 million each year on jetting around and on meetings and conferences. A new $7 million headquarters building is planned. In 1997, some $1.6 million went for items network officials refuse to explain. "They really never tell you what they're spending money on," says veteran board member John Fung, a liver surgeon at the University of Pittsburgh.
When Shalala tried to exert more control over the rising registration fees, Graham challenged her in a proceeding before the U.S. General Accounting Office, claiming she had no right even to know how he spent the fees. The suit was settled; Shalala backed down.
Why not simply bring in another contractor to ration organs? Good luck. The congressional committee in charge of such matters is headed by Representative Thomas Bliley, from UNOS' home city of Richmond. His cousin Paul S. Bliley is a law partner of UNOS lawyer Malcolm E. (Dick) Ritsch. Last fall, then-Louisiana Congressman Robert Livingston, whose home state includes eight profitable transplant centers, pushed through a bill halting further attempts by Shalala to control the contractor.
After the Senate rejected this moratorium, Livingston got it tacked onto another bill behind closed doors by threatening to hold up funding for the International Monetary Fund. The moratorium ends Oct. 21. But UNOS has already had Wisconsin Congressman David Obey tack another one-year extension onto a bill that was set to go to the full House for a vote in October. His state's four transplant centers stand to lose organs if UNOS loses its grip.
Craig Howe, executive director of the National Marrow Donor Program, recently expressed interest in having his organization bid on the organ contract. After UNOS found out he was interested, his board members, who include 14 physicians, axed him. Although some powerful and prominent surgeons like Fung are an exception, most doctors involved in the business fear offending UNOS lest their organ supply be affected.
In another instance FORBES is aware of, UNOS threatened to retaliate against an outfit it perceived as a rival bidder for the organ allocation job.
Tax-exempt groups like UNOS are supposed to make their financial statements available for public perusal. But UNOS hides significant activity behind two little-known affiliates that aren't required to disclose anything.
The first is the UNOS Foundation, a six-year-old shadow organization run by UNOS staffers. Spokesman Robert Spieldenner claims the foundation doesn't have to file tax returns because it brings in less than $25,000 a year. The UNOS Foundation owns something called the Transplant Informatics Institute, a for-profit company run by organ network staffers. Transplant Informatics is so secret that even some UNOS board members are unaware that it exists.
What does the institute do? The government thinks it markets UNOS-developed software to organ network members. In an audit looking into the use of registration fees for lobbying, the Office of the Inspector General got just that impression. What the institute really does is analyze and sell organ network data to profit-making companies like Fujisawa, the Japanese firm that sells drugs for transplant patients. When the institute has not been able to cover its costs with such sales, UNOS has used its registration fee income to make up the difference. Prospective organ recipients are therefore effectively funding this hidden business.
You'd think someone on UNOS' board would scream bloody murder about all this. After all, the 40-person board is almost half doctors, dedicated to saving lives. But the directors have little idea what's going on. "The board is kind of in the dark," sighs patient advocate Charles Fiske, a former board member.
"We received an annual financial report and pretty much accepted it as written," says University of Oklahoma transplant doctor Larry R. Pennington, a board member from 1996 to 1998. They really don't know how to interpret the data. "All I'm familiar with is hospital sort of activity," admits transplant physician William Harmon.
Realizing that UNOS is out of control, Shalala has put out feelers for a replacement. "I hope we have some bidders this time," sighs Claude Fox, a pediatrician who, as administrator of the Health Resources &Services Administration, oversees transplants for Shalala. The only prospect so far is Santa Monica-based Rand.
Determined to see that Rand does not walk off with the contract, UNOS' lobbyists are pushing for a law that would insure that Graham's group will keep the contract forever. Last month Bliley's committee held hearings on a bill which would require the organ rationing contractor to have experience, something no group but UNOS has. It would also allow UNOS' members to vote on the choice.
"Anything that gives them more of a stranglehold isn't in the public interest," says Fox. "It's like giving the EPA to some land-fill company," says Dr. Fung.
It would be nice if UNOS didn't have a lock on this business. Better still if the federal government stepped out of the process altogether and let doctors come up with creative ways to increase the supply of organs. (How about giving people who sign up as potential donors when they are young some priority in getting organs when they are older?) Once there are enough hearts and livers to go around, there won't be unaccountable arbiters holding sway over our lives.
http://www.forbes.com/forbes/1999/1101/6411164a.html..........................
Swap Meet
Brigid McMenamin, 06.12.00
JAMES ALTHAUS' SECOND KIDNEY transplant failed last year after 13 years, landing him in a queue of 45,063 waiting in the U.S. for a kidney. Doctors told him to plan on three evenings per week on a blood-filtering machine for the next three years. The 50-year-old had been on dialysis before. He wasn't relishing the incessant humming of those machines, echoed all day long by the sound of the pool filter at the swim center he manages in Lewisville, Tex. "I said, 'Oh, cuss,' " recalls Althaus.
Elise Knox, his wife of 20 years and an aquatics park manager, volunteered to donate one of her own kidneys. Though good health and type O blood make Knox a fine donor for anyone, lab tests showed Althaus' body would reject her flesh. So Knox got an idea to swap with another star-crossed pair. "I'm bound to match somebody out there. Why can't we make a deal?" says Knox.
Swapping kidneys and other organs is something that has been fantasized about for years, only to be deterred by scientific obstacles, as well as thorny legal and ethical concerns. That's why the Dallas Transplant Institute isn't ready to embrace Knox's idea. Some opponents fear that a voluntary swap is essentially no different from a pay-for-organs scheme, illegal under federal law.
But now a few doctors are poised to challenge the prevailing view and try it. Hospitals in at least five cities, including Boston, Chicago and Minneapolis, are ready to perform organ exchanges between pairs of donor-recipients. The first kidney swap in the U.S. is likely to take place this summer at the University of Washington Medical Center in Seattle. An even more controversial scheme that will allow people like Knox to submit their kidney to a donor pool in exchange for allowing their friend or relative to move to the top of the waiting list for cadaveric kidneys is under way this month in Washington, D.C.
The increased use of living organs is a blast of fresh air for the estimated $3 billion transplant industry, long stifled by the federal government. Some 3,000 kidney patients die each year while on the waiting list maintained by UNOS, the rogue cartel that monopolizes the harvesting and rationing of organs from patients who have died, (seeFORBES, Nov. 1, 1999).
"To the extent [living] people can donate, we can avoid a lot of bureaucracy and move on," says James P. Marzano, 52, a kidney donor and founder of Nephros, a Chicago not-for-profit to promote kidney exchanges.
Ten years ago living donors were scarce. Doctors usually required a relative who matched closely on a test of human leukocyte antigens, the markers the immune system uses to distinguish foreign flesh. Surgery required months of recuperation for donors. So, though it was safe, with fewer than 3 deaths per 10,000 donors, few people even came forward to be tested for a match.
Why is the organ swap movement gaining steam now? Great strides in medical technology have given living donation a big boost. Surgeons are mastering less invasive laparoscopy techniques, which lead to faster recovery times. At the same time, researchers have developed better antirejection drugs--such as Fujisawa's Prograf (tacrolimus), Wyeth-Ayerst's Rapamune (rapamycin) and Roche Laboratories' CellCept (mycophenolate mofetil).
With these drugs, even a poorly matched living kidney performs about as well as a perfectly matched so-called cadaveric kidney, provided donor and recipient pass the "cross match," a test in which the donor's blood cells are mixed with the recipient's to see that the donor's survive.
As a result, the use of living kidney donors more than doubled, from 1,903 in 1989 to 4,432 last year. That put 35% of the supply outside federal control, compared with less than 22% a decade earlier.
The rate is bound to speed up as doctors prod patients to comb their card files instead of relying on the waiting list. "All you need is a negative cross match and compatible blood types," notes Seattle-based surgeon Christopher Marsh.
Despite the medical advances, most doctors continue to simply dismiss the 10% to 20% of living donors who, like Knox, prove incompatible with their intended. After all, they have no way of knowing of a suitable pair at another hospital. Anyway, is it ethical to broker such a deal? To subject the donor to the risk of surgery without direct benefit to the donor, violating the physician's credo to do no harm? What about liability if, say, the first pair to receive refuses to reciprocate? Jeffrey Kahn, a bioethicist at the University of Minnesota, is among those who believe that swapping organs would violate a 1984 federal law prohibiting trafficking in living tissue.
But more doctors are growing comfortable with swaps. They say that swaps don't violate the 1984 law because no money changes hands. And they say there's no ethical problem, provided the donor understands what he's agreeing to. "Live donor swaps are acceptable, provided the donors give informed consent and the donation doesn't significantly risk shortening life," says Robert Veatch, a Georgetown University ethicist.
At the University of Washington swap this summer, doctors have set up an elaborate procedure to make sure nobody gets cold feet. There, each of two women have agreed to let doctors harvest one of her kidneys and install it in the other woman's sibling. It'll be a simultaneous four-way exchange, with four operating rooms, each staffed with a surgeon, a resident, an anesthesiologist and two nurses. Program Director James Perkins expects to do ten to 15 kidney swaps each year after that.
The plan in Washington, D.C., which involves a consortium of seven area hospitals, is even more radical. If someone donates a kidney to a donor pool, the consortium will allow the spouse or other designated recipient to move higher on UNOS' local D.C. queue for a cadaveric kidney.
Is that fair to others on the list, such as those with no willing or able family or friends? Yes, says Veatch, who vetted the plan. When you bring in a living donor, he says, you're helping other kidney patients by taking one person off the recipient list without depleting the supply.
Washington, D.C. hospitals also plan to pool kidneys donated by anonymous persons who are willing to give one to a stranger without compensation. Though dozens of such Good Samaritans volunteer, there's never been a way to pair them with recipients.
Surgeon Jimmy A. Light notes that if just one American in 10,000 were to volunteer a kidney, it would wipe out the waiting list. Ultimately, the only way to balance supply and demand is to deregulate the market. Is this a first step?
There's less of a need to die waiting for a kidney from a cadaver. Better medicine is bringing in more living donors.
126,132 kidney transplants performed since 1988.
36,075 transplants using kidneys from living donors.
35% of transplants used living donors in 1999 vs. 22% in 1989.
FROM:
http://www.forbes.com/forbes/2000/0612/6514136a.html
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